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Rituxan

My rheumatologist has talked a bit about Rituxan. Currently, it's used mostly as a chemo drug for cancer and in some cases for RA. Mayo Clinic is doing some work with it for Lupus. I have stubbon, recurrent pericarditis and pericardial effusion and can't seem to reduce steroid use without another episode. So she's thinking of referring me to Mayo, if they'll accept me as a patient. (I live in Minnesota, so referrals to Mayo are not uncommon.) Has anyone had any experience with Rituxan? I've read some about it, but would like to hear about any real experiences.

Jody

"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

I know butterflyRN has used it but also had a problem with her insurance refusing to pay for it afterwards, which is the same situation I had - BC/BS classes it as "experimental" for lupus and won't pay for it, so you definitely need to find out if your insurer will authorize it - it is very expensive.

I found a medical article about the outcomes of some clinical trials involving Rituxan for lupus - if you can wade through the medical jargon, it's pretty interesting - some patients reported improvement even 18 months post treatment. That would be a lot better than once a month cytoxan!

I have tried Rituxan

Just wanted to put my 2 cents in about this treatment. I had it in august 2006 - 2 infusions 2 weeks apart. They gave me a big dose (if I remember correctly 2000ml.
It is important to have the infusion over a longer period of time (3-4 hours). I was also given a big whopping dose of IV steroids to minimize the chance of an infusion reaction.
I had very few side effects - maybe a headache, shocking for me as I normally have nausea with everything I try. My lupus symptoms appeared to be completely gone for about 2 weeks post treatment. Things kind of limped along where I would get the odd joint pain and fatigue but the flares seemed really mini - things would seem to last a couple of hours instead of weeks.
I don't feel that Rituxan has knocked me into total remission like we all hope when embarking on an expensive, experimental journey but its been effective enough in dampening the symptoms that I would do it again. Oh and I have reduced my prednisone from 30mg to 13mg (this week anyhow) but am feeling really sore in the AM/PM. I hope this helps. I haven't posted very much before so am not really sure the protocol, but I will check back to see if you have any other questions.
Good luck to all!

mdjode-
I have been reading your posts about your rec. pericard. I too, have been battling the same thing for the last year. Finally, started Colchicine(do look into this!)in June. (I got into a cardiologist, should have done that a long time ago!) At that time I was back up to 20 mg pred. Over the last year have had recurrent pericard. at least 6 times, and of course, up the pred every time. :x So....now, I have just lowered to 8mg today. Everythng is going very well so far. I have read that pericarditis can become steroid dependant. Google to find all kinds of info about it and the Colchicine. I also take Methotrex., Warfrin, Protonix along with the pred and colchicine. I have also had 4 RITUXAN treatments. That was in April of 05. That went well, but because of the recurrent pericard. I am not sure what to call the outcome. I did not have other Lupus symptoms with the recurrent pericard. I wish you the best of luck! Kimb

rapid heart rate with pericarditis?

mdjob and Kimb,
Sorry to hear about the recurring pericarditis. It sounds like things are starting to settle down for both of you? I was just wondering if you have normal heart rates? I had a problem with my mitral valve last year - not sure what collapsed it(lupus or lupus drugs) doctors aren't sure. They successfully repaired the valve (hard surgery though) but my heart has been racing since. Resting rate of 110-140 They don't see evidence of pericarditis but I can't get to the bottom of the cause. It makes me tired and anxious but the beta blockers help.
Anyhow just curious as to your heart rates.....
thanks
Karen

Karen

Has your doctor ever mentioned radiofrequency ablation for your abnormal heart rate? I had this done a couple of years ago because of a history of SVT (inherited problem unrelated to lupus, but cardiologist was afraid it increased risk of lupus heart problems). I can't take beta-blockers because of asthma, and alpha-blockers dropped my blood pressure too low, so my docs recommended the ablation procedure. If your doctor hasn't mentioned it, you might ask whether it would help you.

Marycain
Thanks so much. I have never heard of radiofrequency ablation but my appt with the cardiologist is coming up so I will mention it. Its good to know there are other options other than the beta blocker (which lowers my already low blood pressure).
thanks again! This forum is such a blessing.
Karen